"We are being ignored."
-Barbara Collura, Executive Director of RESOLVE
"If you're not going to fight for yourselves, how is anyone else going to fight for you?" -Debbie Wasserman Schultz (D–Fla.)
A Belly Full of Fire, Part One: Advocate or Abdicate
If you haven't read SELF Magazine's article on infertility in their August issue, do me a favor: click on this link, open it in a new tab or window and read in its entirety after you read this post. When I first read it earlier this week, I felt like I had been punched right in the stomach, my eyes bulging, my face red and contorting as all the air escaped from my lungs. Had I been doing all of this advocacy work for nothing?
When I tell people that no, I don't do infertility advocacy for a living, they are shocked. This blog, RESOLVE of New England, my video- I do it all in my free time. I work for a small private college in the housing department. My days are spent dealing with roommate conflicts, programming forms from RAs, and developing a comprehensive new First Year Experience program for our incoming freshmen this fall. I'm in this line of work because that's where my non-committal communications degree lead me. Between working 35 hours a week and devoting every waking hour to my advocacy efforts, I have be blunt with y'all: it's exhausting. I have been running myself ragged for the last couple of months, but I do it because advocacy is vital. Advocacy feeds my soul.
Advocacy is necessary because of the veil of shame and silence that surrounds the 7.3 million people in this country who cope with infertility every day. Jennifer Wolff Perrine raises this same question in her article for SELF: "It’s a strange dichotomy: how can a health issue that gets so much ink be shrouded in silence?"
Infertility is a sexy media topic right now, one that has been taking a substantial amount of heat recently. Take for example yesterday's article in Newsweek: Should IVF Be Affordable for All? After the Nadya Suleman fiasco, celebrity gossip surrounding stars like Celine Dion, damaging trite portrayals in Hollywood like Jennifer Lopez's The Back-up Plan and the public's critical gaze on affordable healthcare in a gloomy economy, this Newsweek article just adds more fuel to the fire of opposition on infertility treatment coverage:
Whether infertility should be classified as a disease or a socially constructed need is a dilemma at the center of this debate... A complicating factor, according to St. Luke’s (Dr. Sherman) Silber, is that up to 80 percent of infertility cases are caused simply by increasing maternal age. “It’s hard to call infertility a disease. It’s normal aging,” he says.Dr. Silber, I hate to argue with an MD, but infertility IS a disease. Just ask the World Health Organization: "This recognition from WHO of infertility as a disease represents a significant milestone for the condition." (Source.) With distorted media images of wanton career-driven thirtysomethings and desperate perimenopausal women salivating to have their own baby bump, Silber's statement is not only inaccurate, but irresponsible as a cited expert in the field. Thank you Dr. Silber, for setting back 25+ years of hard work in the infertility advocacy movement.
With all of the vitriol being directed by the media at infertility- its patients, its treatment, and its very validity as recognized medical disease- our advocacy efforts are needed now more than ever.
And it requires infertility patients to take the biggest, most difficult step of their journey. Infertility patients need to start speaking out publicly.
Look, I'll tell you right now: it's not easy to come out of the infertility closet. I was diagnosed on March 18, 2009. The first phone call was to my husband. That evening, we called both our of parents and I called my sister. Two weeks later I sent out an email to two dozen of our closest friends explaining the situation and shared the link to this blog. If infertilty was the new game, I wanted it to be played by my rules. Not once have my friends judged me, asked "so when are you having kids" or told us to relax. We receive a bevy of advice- some helpful, some not- but always extremely well-intentioned and expressed with sensitivity and compassion.
I know Larry and I are the extreme example in this case. I know there are plenty of couples who do not have this same level of support. But you'll never know if you don't try. To this day, I don't regret ever telling friends that I was infertile.
Not only did we find out just who indeed were the folks that cared about us, but just how much they cared. When I uploaded my video and finally blasted it out across the internet, people I never thought would bat an eyelash came out of the woodwork to tell me their stories, to thank me for being so brave to put my name and face out there with this label. I was floored. People I had worked with, gone to high school with, a friend of friend... they picked up on that energy and finally felt comfortable enough to share their stories with me.
I asked in my video: "What if I stopped hiding behind my fear? What if my story can help millions?"
If my story- this one little random woman from Boston- could touch hundreds and hundreds of people (seriously: there are hundreds of emails in my inbox and I'm still getting emails and comments from people who have come across my video)...
Could you imagine if we had 100 people willing to publicly speak out about their experience with infertility? What if we had 1,000 people running a 5K charity race? 10,000 people marching on Washington?
Grassroots advocacy is there for our taking right in front of us and we as a patient community cannot get out from behind our own self-imposed sense of shame and silence.
Oh yeah, I totally just said that.
But so does the SELF Magazine article. Wolff Perrine writes:
Women's silence hurts more than themselves. It ensures that infertility remains an anonymous epidemic, with less funding and research than other common medical problems receive.She cites Lindsay Beck, founder of Fertile Hope:
Because no one wants to discuss infertility, "nothing gets done about it," says Lindsay Beck, ..."Infertility is where breast cancer was in the 1970s—completely in the closet... For the average fertility patient, there is no united front."And as a patient community, we're shooting ourselves in the foot when even those who successfully resolve their infertility choose not to acknowledge their past pain:
However someone resolves her infertility, the tendency is to want to put her struggles behind her. "People want to forget," says Collura of RESOLVE... "We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them."Infertile couples who have found resolution owe it to their children to speak out, to own their disease and walk with it even after they have beaten it.
So what's an infertile to do?
Take the pledge. Start using your real name. Share your blogs with your family and friends. Talk to the media. Call your legislators. Volunteer with your local chapter of RESOLVE. Write grant proposals. Stop caring about what other people think and instead focus on what other people can do to help.
Ladies and gentlemen: I give you "advocacy in a nutshell." No seriously - that's really all that it is. You don't have to have your advanced degree in public health. Patient activism is pretty simple: just tell everyone your story and why it matters.
If all of this seems like too much, then just start by going to RESOLVE's website and take the pledge to do something. RESOLVE says it best: "It's time to stop, look, listen and act. It's time to pay attention." Then get your support network of friends and families to take the pledge. Don't be embarrassed - just send those emails and I'm sure you'll be surprised to see who's willing to stand by your side in solidarity.
Our stories are long overdue to be heard by the public. But we have to tell our stories out loud if they're ever going to be heard.
The bubble of silence, shame, and ignorance surrounding infertility is ready to burst.
Either we publicly advocate for ourselves or we abdicate the right to demand change.
. . . . .
If this post has moved you, please share it online: tweet it, Facebook it, blog about it... This is how a grassroots movement begins.
Today I wrote about why advocacy matters on the community level. Tomorrow I'll talk about why advocacy matters on a more personal, healing level for infertility patients. Stay tuned for A Belly Full of Fire, Part Two: The Wounded Healer.
Photo by Natalie Lucier via Flickr.
